Resources

Epilepsy is more common in children than adults, with several epilepsy syndromes exclusive to the pediatric population. In this Topic Brief, the authors identified 401 relevant empirical studies reporting specifically…

This multipart project included a survey of women and healthcare providers regarding obstetrical, gynecological, and breast care for women with disabilities; a review and analysis of survey data by broadly…

This symposium served as a vehicle for clarifying and exploring conceptual and practical interconnections among the organization’s patient experience, patient engagement, and learning healthcare system initiatives. Project Lead: Daniel Davis…

This summit was held in August 2016 in Arlington, Virginia, and convened physicians, patients, the cancer support community, and researchers in meaningful dialogue to better understand how skin cancer patients…

This conference was held in September 2016 in Philadelphia, Pennsylvania, bringing together a host of healthcare providers, clinical guideline developers, researchers, policy makers, insurers, patients/patient representatives, patient advocates, and other…

This national summit held in October 2017 in Boston, Massachusetts, convened patients who have experienced vision loss from age-related macular degeneration (AMD), AMD patient caregivers, vision advocacy leaders, vision researchers…

This community convening was intended to build and give voice to a new community of fully engaged stakeholders for the purpose of identifying, facilitating, and delivering desired outcomes to celiac…

This convening was intended to advance the body of knowledge on missed and delayed diagnosis of heart disease in women and increase interest in comparative clinical effectiveness research and patient-centered…

This project adopted the CEERIAS in-person approach from the PCORI-funded CEERIAS study, to the COVID-19 environment using virtual platforms such as video, radio, social media, and texting for community and…

This conference convened PCORI-funded research groups and multi-stakeholder groups to accelerate perinatal depression patient-centered outcomes research/comparative clinical effectiveness research in rural communities. Project Lead: Kelli Ryckman, PhD, MS Organization: University…

This project involved patients and stakeholders in collaborative production, initially as redesigners to adapt the existing engagement tool, Integrating Behavioral Health and Primary Care (IBH-PC), into the PCOR/CER Partnering Guide…

This series of convenings brought together stakeholders engaged in suicide prevention to share evidence-based practices in reducing suicide incidence in western Colorado and develop a patient-centered outcomes research/comparative clinical effectiveness…

This project, in partnership with Smart from the Start, sought to learn directly from members of underserved communities about challenges created by COVID-19 that must be addressed to facilitate partnership…

Howard Brown Health, in partnership with Four Corners, convened transgender and nonbinary (TNB) community leaders, patients, clinicians and researchers at The Next STEP (Supporting TNB Engagement in PCOR) Convening to…

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